SEAN MILLETT insists being the older sibling to Ruth is fantastic and he loves helping look after her.

She clearly adores him, though, tearing in from school to fling herself on top of him. He responds by swinging her up in the air and tickling her, with much giggling and shrieks of glee.

The age difference between them might always have meant that Sean, 18, would feel responsible for nine-year-old Ruth, but there is no doubt he feels particularly protective of her. She has Cornelia de Lange Syndrome (CdLS).

Children with CdLS are small at birth and remain small compared to children of the same age.

They are slow learners, but this varies from mild to profound, and some have limb abnormalities, ranging in severity.

But for Sean, having a disabled sister will never be a chore. In fact it is quite the opposite.

He said: “Ruth only means good things to me.

“She is always there, always happy to see me and hug me and if something is bothering me I’ll sit down and tell her all about it.

“She doesn’t understand and she can’t talk, but it helps. If I’m not home, she looks for me and if my mum and dad are out we’ll just settle down in front of the telly and have a nice time.”

Ruth Millett, with older brother Sean in 2003

He does remember being told she had problems when she was just nine months old but that didn’t make much of an impression then.

Sean said: “She was just a little baby, like any baby, and I was a typical 10-year-old so I don’t suppose it sank in.

“I’ve never felt that my mum and dad gave me any less time and attention because of her condition, though now I’m older I do realise just how much time they spend dealing with Ruth.”

Their dad Brett smiles at this, saying: “Everything in this family revolves around Ruth.

“I’m so glad Sean feels like that because having a child with a condition like this can take over everything, especially your time.

“Up until fairly recently Sean’s gran lived just across the road so he could spend time there as well but, sadly, she now has Alzheimer’s so cannot cope alone.

“My wife Maggie works full-time as a medical secretary and I was a social worker but had to give that up because someone had to be here for Ruth coming home from school or going to medical appointments.

“I now do voluntary work to fit around Maggie’s work, so there is always someone here if needed and Sean helps out as well.”

Sean is a typical teenager in many ways, very involved with music and sport, enjoying cycling and camping – even at this time of year – but there’s another side to this softly spoken young man.

He has a very mature attitude to the way Ruth’s condition has impacted on his family’s life and makes a conscious decision to help his parents.

Ruth Millett, with older brother Sean in 2006

He said: “I still have the same life I always had and I’ve never felt restricted. My social life never stopped and I was never teased about her condition. My mates all love her and they come round here and are totally used to her grabbing their hands and pulling them away to see something.

“Now I’m an adult, my parents have one more person to help, especially since my gran can’t do it any more and it’s just part of life.

“It’s like having a toddler, so we’re really careful about locking the front and back doors, using stair gates and making sure we don’t leave glasses or anything like that within her reach.

“She goes into respite for a weekend every six weeks and I usually take off then and stay with a mate so my mum and dad can have the place themselves.”

When he was younger, Sean was part of a sibling group providing support to the brothers and sisters of children with a range of disabilities and he credits that with giving him a greater awareness of the problems many people face in that situation.

He said: “Ruth is lovely – she’s always smiling and laughing and we have a good time but life wouldn’t be as easy if she wasn’t like that.

“I met other people there who did feel that their parents didn’t have time or attention for them and a lot of that comes down to the condition the family is dealing with.

“Now I’m older, I know just how much time my parents devote to Ruth and mostly I’m a fairly optimistic person and think that whatever might happen we’ll deal with it.

“But she’s little and cute just now so we get very positive reactions from people who don’t know her and maybe that will change when she’s older.

“But I do see her maturing a bit, so maybe she won’t be shouting out or doing other things that make people uncomfortable.

“My main concern is for my mum and dad and how they’ll cope physically when they’re older. They fight so hard for everything for her but, again, she might be doing more for herself.

“She’s doubly incontinent but we’re hopeful she’ll learn to go to the toilet eventually – all we can do is help her to achieve all she can.”

It comes as no surprise when Sean says he is considering going into a caring profession.

He already helps out at a Friday night Scout group and has previously volunteered with Sense Scotland to help younger people cope with the restrictions that can be placed on their lives because of a sibling’s condition.

He said: “It’s very hard for families dealing with this situation. You have to go out there and find every single bit of help available and go on waiting lists and try to find out who can do what and it’s exhausting.

“I think I’ve always had some social awareness because of my dad’s job, but I’ve met people as a result of Ruth’s condition who lead very difficult lives and I don’t think enough people are aware of that.”

It is also a subject people find hard to talk about, in case it seems as if they don’t care about their family members, but there is no doubt that many families in similar situations to the Milletts are exhausted, often extremely short of money and constantly worried about what the future will hold for their child.

The care and support available can also vary enormously across the country and organisations such as Sense Scotland play a big part in helping people get help that’s right for them.

Sean said: “I love my life. I know how lucky I am.” Then he swept Ruth into the air as she flung her arms round him, both of them grinning with delight. As big brothers go, he must be pretty near perfect.